Taste: My Life through Food(61)
The Treatment
In order to undergo targeted radiation of the neck or head successfully, the patient’s head must be completely still. Five days a week for seven weeks, a bespoke webbed mask would be placed over my face, my neck, and the upper part of my shoulders and then pinned to a board to completely immobilize my head during the sessions. A “bite block” was then inserted through a hole in the mask and clenched between my teeth to keep my mouth and tongue also as still as possible. I was beginning to realize that, for better or worse, most major influences in my life come through this orifice.
After three treatments I developed labyrinthitis, a condition from which I had occasionally suffered in the past. It is an extreme form of vertigo causing horrible nausea and the inability to do anything but lie down until it passes. Unfortunately it also caused me to completely lose my appetite just as the radiation was beginning very quickly to take its toll on my taste buds, my salivary glands, and the flora and soft tissue of my mouth. After a week of treatments, anything I was capable of putting into my mouth tasted like old wet cardboard. A few days later everything tasted like the same old wet cardboard but slathered with someone’s excrement. A constellation of ulcers erupted in my mouth, as did viscous, wretched-tasting saliva. From this point on, day after day, all of the above just got worse and worse. The smell of any kind of food was repellent to me because it didn’t smell like what it really smelled like. Only the worst components of food were what I smelled or tasted if I even dared put anything in my mouth at this point.
My inability to eat anything save a few sips of beef or chicken broth continued. I made attempts to find something in the fridge to eat, but even upon opening the door I was confronted with odors most foul. As I said, I could only smell the worst components of any given food, therefore each of those components in every carrot, carton of milk, orange, and leftover roasted chicken sitting innocently in the fridge coalesced into a fetid wall of stink. I tried a few more times but soon ceased visiting the fridge and finally the kitchen itself entirely. If Felicity, who was very pregnant at this point but as strong as ever, entered the bedroom where I lay in a profound state of nausea, unable to even read, and if she had just eaten or had been cooking something, the odors that clung to her were so powerfully repellent to me that I would ask her to stand at a distance for fear of vomiting all over her. I was given protein drinks but could barely get them down. The morphine I was given to dull the pain and help me sleep caused such dreadful constipation that at one point I thought it might only be relieved by the use of a mini pipe bomb.
The irony was that while I was getting my chemo treatments once a week or getting intravenous fluids to hydrate me a few times a week in the hospital, I watched cooking shows. As they say or tweet, “WTF?!” This was an act of pure masochism, as even just the thought of food disgusted me. In hindsight I suppose it was a way to cling to what I loved or remember what I’d once had because I was so desperate to have it again. I was determined to make myself heal faster than any patient ever had. I would regain all of my sense of taste and saliva sooner rather than later, no matter what the doctors or statistics said, by watching MasterChef; Giada De Laurentiis; Iron Chef; Diners, Drive-Ins and Dives; and that gross, unnecessary show with the guy who eats as much of something as possible for no apparent reason and yet somehow still remains alive, because they were the fuel that was going to get me there.
Somewhere in the middle of treatments, actually on April 19, Felicity gave birth to Emilia. She was born by cesarean, which as we know is easiest on the baby and not so great for the mother for quite a while afterward, although vaginal birth isn’t exactly a thrilling experience either. (Let’s face it, if men had to give birth, there would probably be only a total of about 47 people living on the face of the earth today as opposed to billions, and abortion clinics would be just another department in Walmart alongside auto parts, golf gear, and firearms.) Luckily, I was strong enough to be present at the birth to see Felicity and our sweet issue afterward, but I soon had to disappear into my bed again. I kept thinking I would regain my strength enough to hold Emilia and help Felicity, but by the fifth week I was so weak, was so nauseous, and had lost so much weight I practically begged to have a feeding tube implanted in my stomach. That tube was to remain in me for almost six months.
By the time my treatment had ended, I had lost thirty pounds (about two stone), had lost all of my facial and neck hair, and could barely walk up a flight of stairs. Upon our return to London, I had to stay in bed all day and feed myself through the tube, with either protein shakes or, eventually, food of my own making. I had missed cooking so much that I would struggle through the smell of the ingredients just to be able to stand at the stove and create something I knew I could eat. What it tasted like didn’t matter, as it was going directly into my stomach by way of the tube, but it was important to me that if someone else were to eat it by mouth they would find it appetizing. I would puree beans and chicken stock with some pasta or even egg fried rice, but had to thin it all quite a bit with water or more stock so it wouldn’t clog up the tube. The tube was also the way I hydrated myself, as I could not even drink water by mouth because it burned like battery acid.
When confronted with my weakened condition, my older children, Nicolo, Isabel, and Camilla, were very positive and encouraging. However, I knew how hard it was for them to see me so ill when, not even a decade before, their mother had suffered similarly. It was evident that my being diagnosed with cancer really frightened them, but Felicity and I reassured them that mine was a very different prognosis than Kate’s. However, the trauma of losing a parent never fully disappears. Only the parent does. I knew that no matter how much reassurance we offered, part of them feared that they would have to experience that trauma all over again.